Here we go, the continuing battle plan in my BC Club membership. And the most current. Thanks for your support as decisions finally incurred changes, evident in Chapter 3. Even from the start, I consider myself quite lucky that the cancer was, and has been, detected early. It does raise concerns about the sneaky nature of BC, and the relatively few symptoms that may be an indication something is wrong. How many patients did not get a diagnosis until the cancer had already progressed to a serious stage? Why were they not aware of a potential problem sooner? I too, feeling OK, could have delayed attention. A few more months would probably have put me in a more serious situation.
But my newbie thinking was all wrong too. Cancer had struck, but the first go round had removed it. Well, they removed what they found. Even learning that this is a slow growing tumor process, I had positive confidence. The 4 month wait for another exam found cancer again in round 2. But again, early stages. Slowly gaining insight into BC, this looked like a long term journey.
Those first two episodes also raised questions, that if you have some disease, why wasn’t something being done to go after the problem? Was I a patient who just kept going back to have tumors removed? Hoping for some action, changing doctors provided an aggressive approach toward the cancer. Chapter 3 occurred sooner than previously scheduled, resulting in more than anticipated. But glad to have action.
I probably would have survived the tissue scraping, tumor removal, and chemo treatment just fine. But this time also required insertion of that dang kidney stent, which was advised to stay in there for 2 weeks. Boy, the body sure knew there was something different up there, and the discomfort endured the entire 2 weeks. Ouch.
But good news was on the way. Doc advised that the stent would be removed at an office visit, and at the same time, we would begin BCG Treatment. Woo Hoo, action I wanted, action I was getting!
Time is up, and I’ve delayed the events of Chapter 4 long enough. And this would be my first visit where things take place while the patient is awake. My curiosity wasn’t strong enough, and no, I didn’t watch what was going on down there. Yup, you do notice when the catheter tube is inserted. Stent removal came first. Doc fished around with some device to find it. He could have warned me for that moment, ready or not, here we go. YANK. Youch, that caused quite a flinch on the table. It was over in a second. Despite some lingering soreness, relief was almost immediate. I could move again without pains. Now Doc wielded the large injector syringe, into which they mixed up the magic BCG potion. I learned he uses a 50% mixture(?) Attached to the tube, it was time to fill er’ up please. Gurgle gurgle, right into the bladder. Tube removed, and the office visit was over. Hey, not bad. Treatment 1 of 6 complete. The nosey patient asked to see this kidney thing he had yanked out. Doc pointed to the table. MY GOD, you had THAT THING poked up in there? It’s a tiny tube with holes in it to let urine pass an obstruction. But, 11” long with curly-cues on each end. One end hooks in the kidney, the other in the bladder. It’s not going anywhere. But no wonder it hurt. When the kidney decided to transfer fluids to the bladder, the fluid had to squeeze into those tiny holes, pass down the small tube, then exit via tiny holes at the other end into the bladder. And it sure grabbed your attention when this activity took place, like passing a kidney stone many times a day. This dang antagonistic device went into a bag and came home with me for a picture!!
Now for the BCG regime of 6 hours afterwards. With treatments in the morning, I then went right to work. Only 2 people knew the “specific reason” of my disinfecting process, and the toilet was “mine” that day. Bleach time, thorough hand washing, a hand sanitizer, and disinfectant spray worked well. Sharing the room with one other person, all he knew was that I was soaking some medicinal goop prior to flushing. Just don’t go play in the water. I was able to hold the treatment for one hour before the urge arose, and an hourly routine seemed to follow. The only other side effect was tiredness, which seemed to kick in the next day. An exhausted feeling, where you just don’t want to do anything. And I didn’t!
BCG treatment was on a roll. Visit #2 would be the first time for only one activity. No knives, scissors, cameras or other equipment being poked up there. The fill er’ up, gurgle gurgle routine took but 5 minutes.
Aren’t simple things nice? I guess the recommended holding time is 2 hours for maximum effectiveness. Well, this time I couldn’t even make it 1 hour, followed by 30 minute urges. No wonder people are exhausted, running to the potty all day! Will the treatment have time to do anything? Realizing the side effects would be cumulative over this 6 week period, and BCG increases the urge. HMMMM.
Visit #3. Mentioning this crazy frequency, Doc said it happens. So, he also gave me some free sample prescription pills to help bladder control. The name is VESIcare, intended to delay bladder frequency. I took one right then, but it was too late, I was already loaded! The first week didn’t seem to help, but I think they kicked in after 10 days. Got it up to one hour again, and eventually 2 hours. Even stretched it out to three hours during the night. Also told Doc he must have shot an air pocket up in the bladder, which burped itself out. If you’ve never had air come out of that thing, you’re in for a strange feeling. Hey, I’m at the half-way point already!! I even got gurgled on my birthday! But feeling pretty good, and able to sit long enough, I went out to eat.
Treatments 4 and 5 went by without a hitch, and I got the holding time up to the 2 hours. No problems or effects to report in the process. I did have a friend come into town the day before #5, and we over-did it on the beer! Actually my first, probably since September. Yikes, that had me whizzing every 10 minutes, a mega-flush for my system. Even the pill couldn’t slow down the frequency caused by this magic liquid!
OK, treatment #6. I have graduated from the BCG regime! Crazy doc even hummed the tune for the event. The battle plan has encountered a lot of activity, and I am pleased to have had the action to go after the cancer. This doc has taken tissue to confirm the non-invasive, looked around, found another tumor and removed it, gave me an immediate blast with killer chemo, then followed up right away with the BCG routine. I hope the body combines effort with all this to keep the cancer at bay. While nothing is known yet, doc even sounded positive, and maybe a vote of confidence, as he recommended the next go-up-and-look with the camera procedure for early January. The cancer is slow growing, and if anything decides to sneak by this and re-appear, it would be caught early by January. At least caught early is also positive, but let’s tune the mind to think better than that.
So now you’re as up to date as I am. Thanks for taking the time to follow the journey, and thanks for the space to share the story. Talking is good. Besides this forum, how many real people have you found with BC to talk to? In 9 months, I have met two. One of them helped chart my destiny in a more positive direction.
As one person mentioned earlier, this is not a journey of choice. It’s a frightening club to join, but not embarrassing to belong to. Specific to B-C, this forum has “experienced” members willing to share their personal insights that may help answer multitudes of questions and concerns, or just to provide plain old support in a time of need. Perfect for a Newbie to ease the anxiety. Bye for now, and best wishes to everyone.
Hello RB... I am happy that Episode 4 was a much more positive story. You have earned your BC merit badge for sure! The description of the kidney stent was informative because I have wondered what that looked like and how it worked. And, ouch on those backward little barbs!
I hope you have smooth sailing from here out! All the info you posted will surely be helpful for those who may just be starting this journey, or whose paths take new directions in treatments.
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Hi Catherine. Yea, a merit badge. That calls for a beer. But I'm still a newbie. I picked up the Kidney Stent brochure (afterwards!) I did take the picture too. Never heard anyone else here mention the need for that thing? Guess I'm inclined to do things differently, like having the BCG air pocket. Thanks for following my journey.